Am I selfish to want to skip dialysis & have a transplant?

[Chris]

Yes jump at the chance if you get the call. Do not hesitate. You can't think about other people who may have gotten the organ as one person mentioned to doing. The reason they call you is because in part your the best match, along with other factors. So you must in a way think of your health first, not others of what could of, might of. Your health comes first, so fight for it. Do what you need to do to obtain good health. Dialysis was a pain, hated going there, didn't go a couple times when I first started till I found a better center. Luckily I only had to wait about a year for my k/p tx and so glad to have it.

[Sluff]

It's a no brainer...get the kidney... to dialysis.

[willieandwinnie]

  Well said petey and Marvin. paddbear GO FOR IT.

[RichardMEL]

I tend to agree.

Down here I believe you can't easily get on the cadaveric transplant list until you starr dialyisis, and even then the weighting is such that all matches with higher dialysis time will get first "dibs" on a kidney. If you were on the list and a match got to you before you started dialysis (as I said, here in oz I am not sure you are allowed to be active on that list until you start.. but I am not 100% on that).. well then you'd HAVE to take it.. because you would thus be the best match for that organ.

And of course if you had a live donor that worked out hell YEAH take it... you wouldn't be taking anything away from anyone else with a live donor and putting off dialysis is a wonderful thing. So definitely go for it.

[AlasdairUK]

The best time to have a transplant is about 6 months before you need dialysis, the problem is getting onto a list and waiting for a match. If you have a lived donation option look into it well in advance as the whole process takes time, plus you need to book the theatre time for a live donation.

If you get a cadervaric call go for it as you never know when you might get another.

[skyedogrocks]

Not selfish at all!  When Rob started this process pre-dialysis, his surgeons said if you can get a transplant before dialysis, you have a better chance at living longer and less complications.  Have that aquaintance sit in a dialysis chair for 4 hours at a center and see if she changes her mind.  I would never wish what my husband goes through on anyone.

[KR Cincy]

Janet...I think it would be difficult to find any dialysis patient who woud begrudge someone, especially someone young, vital and with many great years ahead of her, a preemptive transplant. This dialysis stuff makes for a hard life, so if you can avoid it, do so. Anyone waiting may be disappointed, but only in the circumstances, not in you as the recipient. Your transplant would be celebrated, and you acquaintance is just another of the many out there who have no idea what this life is like.

[paddbear0000]

Hmmm, my last post didn't show up!  Anyway, I wanted to thank everyone for sharing their opinions. I really appreciate hearing both sides. If I do go ahead with the preemptive transplant, it will definitely be cadaveric, as I will be doing a kidney/pancreas transplant.  So this whole attempt at preemptive might be a moot point since I will have to be put on the list. My transplant coordinator said that the wait time at the Ohio State Transplant Center was approximately 6 months for a kidney/pancreas transplant. I'm not sure I quite believe that, but we'll see.

[Bajanne]

i am weighing on this thread a bit late (as I tend to be these days!), but I do not see how looking after your health and well-being could ever be considered as selfish.  go for it!

[Slywalker]

Paddlebear - you are not selfish.  I was working on a pre-emptive transplant from a live donor but due to test cancelletions, transplant unit staff being "too" busy, and life that just got in the way - I was not able to have my final end goal of a pre-emptive transplant.  However, it was not for lack of trying.  I did end up being one of the very lucky ones though.  After a preceeding 10 years of slow kidney failure I ended up having to do dialysis for only 9 months or so before I had my transplant surgery last September.  But my short time on dialysis was because of the fact that I had a live donor.   

Even though we were working on a live transplant I was also on the regular transplant list.  And, I went on this list before I started dialysis - well, it was only a month or two before but they did qualify me for the list. 

Good luck in your quest.

Take Care

Sandyb

[Chris]

My wait time for a kidney and pancreas in Chicago may have been around 6 months, but there are two factors when trying to figure it out. When I was first diagnosed with kidney failure, I went for a kidney transplant. The hospital I was sent to for information seminar said that pancreas transplants are being performed. Unfortunately this hospital did not do one yet since it was new to their program and I didn't want to be the first one there to make a long story short of that experience. So while I was on the kidney transplant list with that hospital, I went to 3 other transplant hospital seminars. About 4 months later I was put on the kidney and pancreas transplant list with the hospital I chose for the surgery. Then while on dialysis I did not know the unit stopped taking blood for transplant screening each month until I got a call from my transplant center asking if I had a transplant from another hospital because I was taking off the list. A person wit the same name somehow got mixed up with mine, so I was taking of the list by a f.u.b.a.r. mistake. After everything was straightened out in less than 2 months, I received my k/p transplant. So if we count the day I was put on the k/p transplant to the day I got my transplant is 11 months. It could have been less if I wasn't taken off the list. So it is possible for a 6 month wait time.

[mariannas]

No way....six months???!!!  What is it for just a kidney?  I'm thinking I need to get myself waitlisted in Chicago!  My wait time is supposed to be 5-6 years at least (due to my sensitized state). 

[Chris]

At the time I was going to transplant seminars before my transplant, the different centers were say 4 to 7 years for a kidney only and about 2 years for a dual k/p transplant. One thing I had going in my favor was my health, then being taken off the list by a f.u.b.a.r. error. I was told why dual organs have a short wait time compared to a single transplant (kidney), but I am not 100% sure if my memory is right.

[Beth36]

I say go for it!  When we found out my mom's kidneys were failing, I wanted to know who to call about being tested.  When we found out her PRA was high, I looked on the internet and found out everything I could.  I found this website in the process...my mom isn't on dialysis yet.  She's hanging in at 9% function and waiting for her number in queue to be called (she has a living donor, my sister).  My siblings and I did everything we could short of doing our own nephrectomies to help our mom and I will say that yes, we are being selfsih.  We don't want to lose our mother.  We love her too much.  I say do what works for you.  It's your life and you need to be proactive.  I wish you all the luck in the world!


Beth

[RichardMEL]

For some reason I am not sure Kidney/Pancreas transplant wait times are A LOT less than just Kidney transplant wait times (and I know that doesn't really make a lot of sense). I understand in Australia it's about 8 months for a K/P transplant vs. 4 years for a Kidney. I had a friend in the unit who is waiting for a K/P transplant and she told me they told her it was approx 8 months wait list.

[Razman]

I have the same question.  Why would a K/P  transplant be  faster than just kidney.  Since the organs will be come from a deceased donor why don't they go to the matching kidney patient that has been on the list the longest?

[Sluff]

Good to see you Razman.

[okarol]

I have the same question.  Why would a K/P  transplant be  faster than just kidney.  Since the organs will be come from a deceased donor why don't they go to the matching kidney patient that has been on the list the longest?

Kidney patients are given transplants in order of "wait time"  but other organs are allocated by medical urgency. You can do dialysis for kidney failure, but if you lose your pancreas there's no treatment that can sustain life. I believe that's why kidney/pancreas transplants are given ahead of kidney transplants.

[BigSteve]

I went to the UCLA transplant orientation yesterday. The wait time for straight kidney transplants is 5-7 years. The wait time for
pancreas/kidney was said to be 18 months to 2 years.

[petey]

okarol is right ....

Kidney patients are given transplants in order of "wait time" but other organs are allocated by medical urgency. You can do dialysis for kidney failure, but if you lose your pancreas there's no treatment that can sustain life. I believe that's why kidney/pancreas transplants are given ahead of kidney transplants.

[skyedogrocks]

Different hospitals have different opinions about Pancreas/Kidney transplants.  The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it.  They have seen better results of keeping both organs longer by doing separate organ transplants.   

[stauffenberg]

People generally require pancreatic transplants because they have type 1 diabetes, in which one tiny sub-structure within the pancreas, the beta cells, has been destroyed.  They can live about two-thirds of a normal life expectancy without any beta cell function at all, just by injecting insulin to replace the most metabolically important of the many hormones that healthy beta cells normally produce, so a pancreas transplant is not needed on any special emergency basis, since the lack of beta cells is easier on the body than the lack of kidneys is. 

Aside from insulin and its related hormones, the pancreas produces digestive enzymes, all of which are easily substituted for by oral medications if the pancreatic function aside from beta cell function ceases for any reason.  Pancreas transplant patients whose pancreas is being destroyed by immunological processes discover this usually not because of symptoms from the rest of the pancreas failing, but just from the beta cells dying off, which will cause less insulin to be produced and become visible as elevated blood sugar.

The waiting list for combined pancreas/kidney transplants or close sequential kidney and pancreas transplants (which are now preferred) is shorter than for kidneys simply because it is a separate list from the kidney waiting list.  Only a select minority of patients are put on the pancreas/kidney list, and although this list only has a small number of pancreases available, the wait is still less because of the relatively small number of patients allowed on that list in the first place.  In contrast, everyone except those too old or with too many co-morbidities goes onto the massively long wait list for a kidney.

[mel75]

That is my thought exactly why cant we just get a transplant if we need one? Why do we need dialysis? I just want my transplant and get on with my life. Dialysis takes so nuch out of us and people just don't get that.
If I could have a transplant and skip this dialysis thing I would be lovin life!!!

[Chris]

Different hospitals have different opinions about Pancreas/Kidney transplants.  The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it.  They have seen better results of keeping both organs longer by doing separate organ transplants.   

Glad I didn't go there. I just don't believe in their thinking. Get it over and done with in one thinking, why put life on hold twice, plus the organs are from the same person. I haven't had any major issues with my simultaneous tx, so I would have to do some research to get an idea why they believe that protocol of separate transplants is better.

[skyedogrocks]

Different hospitals have different opinions about Pancreas/Kidney transplants.  The surgeons at Rob's hospital, Massachusetts General in Boston tell us that a P/K transplant is way more taxing on the body and therefore won't do it.  They have seen better results of keeping both organs longer by doing separate organ transplants.   

Glad I didn't go there. I just don't believe in their thinking. Get it over and done with in one thinking, why put life on hold twice, plus the organs are from the same person. I haven't had any major issues with my simultaneous tx, so I would have to do some research to get an idea why they believe that protocol of separate transplants is better.

Rob would rather have a better chance at keeping both organs, so he is staying with the hospital.  It is one of the best hospitals in the world and the surgeons are superb.  Also this hospital has the best odds of keeping a kidney from rejecting.